Being Bionic

It is 3 years, 2 months, and 13 days into my journey with cochlear implants, meaning since the surgery for the very first implant. It’s been a long time since I updated this blog – my last entry was 1 year and 10 months ago! Wow, almost 2 years. I do feel bad that I haven’t updated in so long, but to be truthful, there wasn’t much to write about up until a few months ago. Yeah, I should have blogged then, but it didn’t occur to me to blog about things as they were happening, so I will just have to do a long update. Get comfortable!

Some may be wondering about my progress with the implants over all during that time, so I’ll just get that out of the way now. Well, I’ll be honest, maybe I got lazy or distracted, or maybe something went haywire with my brain, who knows, but my ability to use the implants actually went downhill. I’m not hearing nearly as well with them as I was a year and a half ago. I am sure this has a lot to do with the fact that I stopped actively working at teaching my brain to use the implants. I guess I thought that I had reached a plateau since I had stopped making leaps of progress and instead was making very slow, nearly unoticeable progress. I figured this was about as far as I was going to really go, and that I couldn’t really “forget” what learned. You know, like riding a bicycle – you never really forget how. Well, apparently this does not hold true to cochlear implants. As frustrating as the thought is, it seems as though you have to work at it your whole life.

I’ll be honest, I feel a little… gipped. No one told me I’d have to work so hard to hear my entire life. This may not seem like a big deal to some people, but those who have been there and done that understand that it is stressful and tiring to constantly “practice” hearing. Even with a wonderful therapist who made the “learn to use your new ears” sessions tolerable, it was still the most frustrating time of my life with the implants. I couldn’t wait for that part to be over, to be done with the pressure to “learn to use them”. Between pressure disguised as “encouragement” from family members and others, and unrealistic overly optimistic expectations from them, I began to resent the implants and even psychologically reject them. I was so tired all the time, it was mentally and physically exhausting. I had enough to deal with, you know, like real life and stuff? I wanted to get on with using the blasted things effortlessly, I wanted to forget they were even there and just have my hearing as it was be a part of my life. (Apparently, that’s never going to happen.)

So when the sessions were done and I reached that plateau, I felt relieved. I thought it was over. But I was wrong. And I’m not happy about that. It’s not fair. Sure, it’s a wonderful thing that I have bionic hearing when otherwise I’d have no hearing at all, but it’s not fair that I have to work so hard for it my entire life when everyone else gets to have it so easily, so effortlessly. Yes, cochlear implants are wonderful, and I am thankful to have them just like I’m sure anyone else that has them is, but I think those in the hearing world miscalculate or misjudge just how much those of us with implants would, could, should, or do love having them. Cochlear implants may solve a big problem, but they give you a lot more to solve in it’s place. I’m pretty sure that when someone says “Wow it’s so cool, YOU CAN HEAR!” I am not the only one that thinks “It’s not as great as you think it is. You’re so used to hearing so easily and effortlessly. For me, it’s work. It’s stress. It’s frustrating. It’s not like one day I went from being deaf to being just like you, it’s more like I went from something I knew and was comfortable with to something that I have to work at constantly while I watch everyone else around me get it so easy… just shut up. You don’t know what it’s like.”

And having implants of course causes expectations of those people in your life for you to be able to do things that despite how much hearing the implants have given you, you just. can’t. do. Like for me, hearing on the phone, and being able to comprehend without reading lips. It’s just not going to happen, and I am tired of it being expected to happen. It could happen, yes, but at this point I’ve gotten to where I don’t care if it does, because I’m so tired of “hearing” about it. I’m also tired of the disappointed faces when, for the 400th time, they ask how the mapping appointment went and my answer is always “The same as all the others”. It’s like they think that each appointment, each surgery, each little thing involved is going to be “THE CURE”. It’s going to make me hear! It’s going to solve all my problems! No it’s not. Why can’t they just be happy with the way things are? I am! As if all that wasn’t bad enough, whenever the results inevitably don’t measure up to their expectations, it’s always my fault somehow. I don’t do enough. I don’t practice enough. I don’t care enough. Oh no, the very idea that maybe I’m NOT going to hear as well as them is just not possible, it’s all my fault! It’s enough to make me sometimes wish I had never gotten them. Some days I consider taking them off for good and making everyone sign, refusing to read lips or talk anymore. What could have been a wonderful experience has been ruined by the invasion of those who think they they own stock in my bionic ears. Somehow it’s become all about THEM and what THEY want. THEY want me to talk on the phone and hear without lipreading. That’s all that seems to be important. Why? Since when did this become about them?

Message? Back off. Simple as that. Back off, and shut up. Accept me for who I am. Quit making assumptions. It’s my life, it’s my hearing, no one knows me or my hearing better than I do, what goes on with me and my bionic ears is between me and the doctors/professionals I work with. If there’s something I want you to know, I’ll tell you! I’ve got enough stress going on with the damned things without your ignorant input!

Anyway, enough ranting – on with the update. So, let’s see… I last wrote about some problems I was having with my implants. I also wrote that they ran some tests and found nothing wrong. Well, after that entry, I continued to have some problems now and then, but nothing more than short occasional annoyances. I really didn’t pay much attention to it, I wrote it off as probably something electronic interfering with my processors that I just couldn’t locate.

Sometime in October 2006, the right side implant (the first one I was implanted with) began going wonky. At first it was just slightly increased occurences of the previously mentioned annoyances (static, etc.) Then it began to happen more and more, to where it was happening at least 2 or 3 time a week. This got worse and worse, the static would get to where it would bother my nerves when it happened so much that my face on that side would twitch, and eventually it started shutting off and on repeatedly. By the time my procrastinating self finally made an appointment in March of 2007 with one of the audiologists in the Hearts for Hearing clinic (formerly known as the Cochlear Implant HELP clinic), it had gotten to the point where it would shut on and off rapidly and repeatedly at any given time during the day. Some days it wouldn’t do it at all, some days just every few hours, and some days all day long. It finally got to a point where it was so irritating, I wasn’t even wearing the processor on that side anymore.

During the month of March 2007 Dr. Wolfe ran a series of tests on that side, but could never “catch” the problem or figure it out. They went all the way up to calling in a lady named Julie Bates who works for Advanced Bionics to test it, and she still didn’t find the problem. They ran me through the ringer of tests doing everything they could, and of course every time I went up there that side would work perfectly fine. It was really very frustrating, because even though I knew they believed me, I wanted them to be able to actually see what it was doing, I needed that affirmation that yes, it is messing up. They had planned to declare the implant a failure anyway if it was still messing up after everything we tried (including all new external parts at one point), but finally at the last appointment before declaring it failure, it acted up while Dr. Wolfe had it connected to the computer and he finally saw what it was doing. I was very relieved, but at the same time it was bittersweet, because it was then confirmed that yes, the implant was in fact a failure and I would have to have surgery again to replace it. If you’ve read my accounts of my previous 2 cochlear implants surgeries, you know this was not good news to me by any means. I was terrified of going through hell again, but I was not about to let everything I’d been through and all that money that had been spent on me go to waste. There was no question about whether or not I’d have another surgery to replace it; I was definitely doing it.

However there was some good news despite the bad news. We found out that since the implant was a failure, Advanced Bionics would completely pick up whatever financial burden our insurance company didn’t. This meant we pretty much wouldn’t have to pay a cent, except for prescriptions afterwards and the gas, haha. Not only that, but after the surgery I would also receive two of the new Harmony processors, which would be an upgrade from the Auria ones I had. Of course this meant I would have to trade in 2 of my Auria processors along with 2 batteries and 2 headpieces, but I was getting new equipment to replace all that, so it was all good. I have not been able to afford to replace the outer equipment, so I was still using what I had received right after my last surgeries. Needless to say, I wasn’t in a good place equipment wise, so in a way all of this was a blessing because I’d end up getting new equipment. The external parts do break or become unsuable due to normal wear and tear, and need to be replaced regularly. As it was, I was already on my last pieces of equipment, so when those broke I faced not being able to use my implants for a while until I could find a way to acquire new ones.

I’d like to make a bit of a mention here: failed implants do happen, but not often. In my case, I had received one of the implants that were part of a recalled batch of implants, that unfortunately were not recalled until I had already been implanted with one. I received a letter from Advanced Bionics informing me that I had been a recipient of one of those implants, along with information on what to look out for. So it’s not a common thing for implants to fail, I don’t think, I just happened to be unlucky with my first one. In fact, I barely escaped the same fate for my second one. The second implant surgery was postponed 2 days before I was supposed to have it because of the recall. So I ended up having to wait longer for the second implant, but apparently I escaped this same fate with the other side! That would have been awful!

So, this concludes the end of part 1 of my update. I shall continue part 2, covering the third surgery, recovery, and activation in my next post.

Today is approximately 1 year and 6 months since implantation of implant #1, and about 9 months since implantation of implant #2.

I haven’t been writing in this journal much lately because I haven’t had much to report on. Progress is still very slow. I don’t really seem to notice myself making leaps and bounds of progress as I did in the beginning, but every once in a while it will hit me that I am hearing or heard something that I feel is a sign of improvement. For instance, the other day I was putting towels away in the cupboard under the bathroom sink, and my husband was listening to his shower radio in the bathroom on the other side of the door. Our bathroom is weird, the sink area is part of our bedroom, but the toilet and shower area are separate, completely with it’s own door. Anyway my head was only inches from the door while I was putting the towels away, and I know I heard the words “500 dollars” in the radio announcement. It was very clear. Another time not to long ago, I was driving and listening to talking on the radio and I heard the weather announcement for the day, “a high of 92 degrees today”. Once in a rare while I will overhear people’s conversations and catch a word here and there. I still have moments where I am hearing something faint and I can’t figure out what it is, then once I do I am amazed, such as crickets singing outside at night or a bee buzzing around me.

However, I very recently discovered something that I consider to be a significant discovery for me: headphones. By headphones, I mean the old school style, like what everyone used to get with their walkmans in the 80’s and 90’s, the headband style with the wide flat ear pieces that fit over the ear. ( I can’t believe I’m old enough to remember that.) Anyway, one day I was really desperate to try out our new iPod mini that I got for free, so I broke out my old bent up headphones from my CD player in the 90’s, with the pads half ripped off the ear pieces. I put both of my processors on the setting that uses only the T-Mic, to avoid interference from the headphones scraping on the mic up next to the processor, and put the headphones on. Despite the shape they were in, I was blown away at the sound quality that I heard! This wasn’t an iPod thing but a headphone thing. I then immediately plugged the headphones into my computer. Wow!!!! I heard the computer in a way I never have before! I proceeded to raid the house for anything with a headphone jack and plugged myself in to everything I could find.

The sound that I hear via the headphones is a completely different world from the sound I hear on telephones and computer/stereo/car speakers. I know that a very large part of it has to do with the fact that I have bilateral implants and the headphones bring the sound as close to the microphones as it can get in both ears at the same time. The sound itself is so very clear, and loud but not too loud at the same time, just loud enough to really be able to hear everything. What was even neater was the fact that I could still hear sounds outside the headphones at the same time, such as the dogs playing and growling or my husband talking, although a bit muffled. I’ve never experienced that before.

What really blew me away more than anything, though, was the natural quality to the sound. I was immediately brought back to my hearing aid days, when things didn’t sound as robotic. I used to absolutely love listening to the likes of Norah Jones, which ended when I got my implants because the music no longer sounded good. Over time all music in general is gradually starting to sound better, but the only music I could really get into is heavy metal, as it sounds the best with implants. But once I listened to everything with headphones, it was like wearing hearing aids again, I couldn’t believe the difference they made. All my favorite songs sounded almost as good as they did pre-implants, only better and definitely clearer! I even heard more to the songs than I ever did with the hearing aid OR the implants without headphones. I’m pretty sure that from this point on, headphones are going to become part of my regular every day accessories. If I could just find headphones like that but tailored to be used with a phone, I might actually be able to use the phone!

I did try a different style of headphones, the noise-canceling kind that have donut shaped ear pieces, thinking that it’d work even better. But I found out that it actually makes things worse, because the pads are bigger and rub against the processor itself more and causes interference. It’s also really hard to get the T-mic positioned in the hole of the “donut”. The plain old headphones that are flat work the best, not to mention they are a lot cheaper and more light weight. If anyone who has an A.B. implant (or two!!!) out there is reading this and want to try headphones, I definitely recommend starting with the regular old school kind, and make sure that you have a program which only uses the t-mic, because otherwise the ear pads rub against the mic next to the processor and cause a lot of feedback. It’s opened up a whole new world for me, so I’d be really interested to get comments from other people who have tried headphones, to get their opinion on how it works with their implants!

As can probably be gathered from the tone of my writing today, I am rather excited about this discovery. But, unfortunately I have to write about some not so happy things too.

A few months ago I began noticing some uncomfortable static on the side of implant #1, my right side. I never paid much attention to it, writing it off as interference from a nearby electronic. But it began occurring more frequently in a variety of places, including places I was sure there was nothing to be causing it. Finally I realized it was an internal problem, not an external problem. The last time I experienced static, I caught it quick enough to tap around my processor to see if I could hear the tapping through the static, which I couldn’t. That confirmed that it’s something going on with the implant. So I went to the clinic and after running some tests on the electrodes, it was determined that the internal parts of the implant are fine. Thank goodness! I don’t think I could handle another surgery!! So, while they aren’t 100% sure it’s the processor, they’ve decided to blame it on that by process of elimination, because everything else is ok and I very recently replaced the t-mic. They have already ordered a replacement, which fortunately is free since it’s covered under warranty, and I am just waiting on them to put my programs on it so I can go up and switch it out.

Two weeks ago, I began noticing problems with the other implant, implant #2 as well. Great. I have an appointment for a mapping in a couple of weeks, so I’ll bring it up then. It’s not worth the gas prices right now, especially since it’s only 2 weeks away. The problems with this implant are different though. It’s not static, but what I’ve noticed is buzzing that only occurs when I am looking down for a long period of time, or laying back or sideways, or any way but upright. When I make my head go upright, or even just move the processor upright, the buzzing stops. Sometimes I can make the buzzing start at will, just by turning the processor any way but upright, and then it stops when it’s upright, starts again when it’s not, stops when it is. Some days it’s like that all day long and some days it doesn’t do it at all. Very frustrating. The buzzing itself is faint enough that it doesn’t bother me, it’s nothing like the static in the other that makes my hair stand on end when it occurs. It’s just the principle of the matter, I feel that the darned thing should work correctly as high-tech and expensive as it is.

I suppose I assumed that with such high-tech and amazing devices, that it would not be likely that I’d experience equipment problems. That was a silly assumption on my part, because as amazing as it is that I’m a cyborg, things malfunction just like with any computer equipment. It happens, so I’m not really too put off by it, it was just unexpected, is all. I’m just thankful that after everything I’ve been through, it’s not an internal issue, which would mean more surgery. I’m also thankful that these problems will be corrected at no cost to me. That is a huge relief. It would be highly frustrating to have to pay for a replacement, especially when I’ve done everything I can to keep them in top shape.

Today is 1 year, 3 months and 21 days since implantation of Implant #1 and 6 months and 21 days since implantation of Implant #2. Both implants were activated approximately 1 month after their implantation dates.

I had an audio therapy session with Tami today, and during that session I realized that I’ve made a decent amount of progress over the last 3 or so months since my last entry. After reading my last entry, I realize that I am not nearly as frustrated with my implants as I was then.

I still get annoyed when the same people constantly ask “How are your implants doing?” or “Are you hearing any more yet?” over and over. Even though the answer is a positive one in that yes I have made some progress, I almost want to say “No I haven’t made any progress” just because I am so irritated with people when they ask me those questions. Obviously the doctors and therapists at the CI clinic don’t count because they have to ask that and besides, my answer usually contributes to answers for me or more progress. I also notice that when it’s people that have never asked me about them before, or rarely ask, I can’t shut up about them and I am eager to share. It’s really just family and friends that ask me incessantly, or nearly every time I see them. I know they mean well but just once, may I please have a visit with them without being asked about my progress with my implants????? I think that’s one thing that families of CI recipients need to be made aware of, especially parents of children. Too much focus on CI’s and progress and whatnot just gets tediously old. Not to mention it adds unnecessary pressure that can actually contribute to rejection of the implants psychologically, or hinder that much-hoped-for progress.

This almost happened to me, I can only imagine what the poor kids are going through with their parents putting so much weight on their child’s ability to use their implants. At least I am aware of this effect and I can say “Back off!” but the children may not realize this and think all sorts of negative things such as it’s their fault or that there’s something wrong with them, that it’s just not gonna work, or even give up, and parents and therapists constantly pushing them just exacerbates the situation. Everyone ends up frustrated and on the losing end. As a result, what could have been a wonderful experience for a child is ruined and made a psychological disaster, all because of too much eagerness on the part of a parent or therapist. Maybe I’m wrong about all this, but I do know one thing: I’M GLAD I’M NOT A KID! This whole experience would have been just awful for me. I very much admire children who are able to cope with all the stress involved with implants, because it was and is very stressful for me even as an adult who considers herself very seasoned in coping with stress.

Anyway, one thing I realized during the audio therapy is that I have made quite a bit of progress, and it was a lot more than I made in previous months between sessions. The thing is, up until today I didn’t realize it because it was so gradual, that me and my husband didn’t really notice the change. But Tami said she noticed a big difference in my comprehension and confidence. I guess one important thing for people struggling with progress with their Cochlear Implants to remember is that they might actually be doing better than they think, it’s just that it’s so gradual it’s hard to tell, and really the only person that could tell is someone that only sees you occasionally. Audio therapy has accomplished this monitoring aspect for me, as well as having helped me learn to use my implant when I got the first one.

So why the good progress recently? I think for me, not putting too much pressure on myself to make it work was key. I decided to just let myself be and let things happen naturally, to let my brain make progress at it’s own pace and not worry about trying so hard to “train” it. Once I did that, I guess things just started “clicking” without me realizing it. Getting rid of all that pressure and stress sort of removed mental blocks that were acting like “implant ear plugs” and now I’m going along at a pace that is good enough for me. I have my whole life, there is no reason to rush through and get to those goals as quickly as possible. It might actually be more effective to let my brain follow it’s own pace anyway, with just a tiny bit of nudging here and there. I still work at it, but only minimally, such as every once in a while I will stop and just listen and see if I notice any sounds that I didn’t notice, and if so, I try to identify it. Or sometimes when I notice that I am hearing a new sound, I will just stop and listen to that sound for a few minutes and meditate on it’s source. I try to listen for all parts of the words when reading people’s lips. But other than that, I don’t try to hard, and that helps keep my frustration low, my optimism high, and my pace steady. I may not be where I thought I’d be by now, but slow and steady wins the race anyway, right?

I also think that having bilateral implants has contributed very much to my progress. I didn’t notice it until recently, but I’ve gotten to the point where I almost can’t stand to only have one on. Everything sounds so much better, so much clearer with two. Once my brain gets adjusted to new maps and bilateral hearing, it wants more and more volume. I’m like an addict, especially during mappings, MORE VOLUME! MORE VOLUME! GIMME MORE MORE MORE!! (insert mental picture of me foaming at the mouth here.) Seriously though, I am really glad I decided to go bilateral because it is a world of difference than just one. I don’t think I could ever go back to only one implant.

As for music, I don’t miss it so much anymore for two reasons. The first is that how much I’m hearing now was definitely worth the trade off, the only thing I lost was music. The second is that I’m noticing I’m actually in the very beginning stages of being able to comprehend music to a degree that I might be able to enjoy it. So there’s hope!

I still have days when I am not feeling as optimistic, but I’ve stopped wondering if getting cochlear implants was a mistake and that helps with those not-so-optimistic days. I feel like that because it took me nearly a year and three months to conclude that it was the right decision, I really understand those who aren’t sure about getting cochlear implants for themselves, or those who have gotten them but aren’t sure if it was the right decision. The latter is an especially hard place to be, so for anyone that is currently in that place right now, I hope that my story helps them somehow.

My only complaints about the implants now are few. It is very uncomfortable and nerve-wracking if somehow the volume dial is up too high when I first put them on for the day. Same goes for a loud sound occuring when my auditory nerves are still drinking their coffee and trying to wake up. After a long day, the external parts leave my ears and head pretty sore, both the processor area and the magnet area. I could get a weaker magnet and that would help, but then the magnet barely stays on, so that won’t work. Sometimes the external equipment just falls right off my head anyway, which is nerve wracking when it happens around hard floors, dirty areas, or anything containing water. But despite several hard falls, they seem to still be ok. Wig tape has been suggested to me, but I am allergic to adhesive, so it’s not a desirable option. Plus in the sticky Oklahoma summer heat, ew!! However, I consider all these problems to be small ones, and I am very glad that these are my only problems with them. It could be a lot worse.

Today is 1 year, 1 month and 3 days since implantation of Implant #1 and 4 months and 3 days since implantation of Implant #2. Each implant was activated approximately one month after implantation.

Everytime I want to listen to music, I get sad. I never realized just how much music really was a part of my life until I couldn’t enjoy it anymore. And it’s all because I willingly gave that ability away. Those who know me well say that I am much better off having implanted my “good ear” instead of continuing to use the hearing aid in that ear, but I’m not so sure anymore. It really doesn’t help things when people, specifically my family, constantly ask “Are your implants doing any better?” That gets really annoying. Their expectation that it will is even worse. Thanks for the pressure, people! And what really gets on my nerves more than anything is when people say “Well so-and-so got an implant and did really GREAT” or “so-and-so could hear just fine right away” or the worst, “So-and-so could do everything, even hear on the phone, and they said it was just like real hearing”. Sometimes I just want to shout: “WELL GUESS WHAT?!?! I’M NOT SO-AND-SO!!! I’M ME! AND NO, IT’S NOT WORKING WELL YET SO JUST SHUT UP ALREADY AND LEAVE ME ALONE!!!!!!!!”

It’s been about 2 and a half months since the left side was activated. I know that really isn’t long at all to adjust to an entire new way of hearing, but I was told I would adjust much faster due to having been able to hear with a hearing aid in that ear before. So far, I have been able to hear more stuff with it, but it still doesn’t sound very good. And ironically, my comprehension seems worse than with the hearing aid. I can no longer understand my loved ones without looking at them as I did with the hearing aid, and I can no longer talk on the phone. And the music… The music has ended for me.

As time goes on, I find I am not making progress as fast as I’d like, if at all, I become more and more disappointed and find myself crying more often when all I want is to hear the beautiful songs I enjoyed before. I can officially say that because of that reason, I do regret implanting that ear. I wish I hadn’t done it.

It’s true that I got sick much more often because of the hearing aid, and that it sounded like crap compared to the implant in my right ear, but it doesn’t make giving up music any easier, nor does it yet seem worth the results I have gained from it. In my mind, I feel that I have made the right decision by implanting it, especially since I only wore the hearing aid occasionally just to listen to music, which would have resulted in my natural hearing declining. But my emotions say otherwise.

I just can’t believe it hasn’t seemed to get any better as far as sound quality in what was supposedly my “good” ear. It drives me crazy and I honestly don’t like it. It seems like no amount of “training” or “audio therapy” I do helps. At this point in time, I am very disappointed and frustrated, but I am doing my best to not give up just yet.

It has been: 10 months and 7 days since being implanted with implant #1 and 8 days since being implanted with implant #2.

I went in for my surgery the Monday before last, on November 29th, 2004. Preparation for the surgery went exactly as it did the last time, the same procedures, same places, and even a couple of the same people and the same operating room! Only this time they put me to sleep with something in my IV rather than with a gas mask.

When I woke up though, it was a whole other story. It wasn’t anything like the last one. Instead it was much worse! The dizziness was a lot worse, the tinnitus was a lot worse, and this time I had unbelievable nausea right off the bat, as soon as I sat up from the bed. I was so very sick! The pain was about the same, enough that they had to eventually give me morphine after a while. And to make matters worse, the bandage was wrapped so low on my forehead it was squishing my eyes and I couldn’t open them very well, and they wrapped my other ear up into it also so it was very squashed, and the bandage was so tight, much tighter than I expected. This time, Dr. Baker stapled my head instead of sewing it. Not sure why, but I actually like the staples better, they look really cool for shock value when you show people, but the best part is that it looks like there is going to be less scarring.

I cried the entire time I was in the recovery area, and I just couldn’t seem to get comfortable. It was unbearable. I couldn’t even move without getting unbearably sick. So we ended up staying well past when everyone else left except for this one nurse that stayed with us. She was really nice, I wish I knew who she was so I could thank her.

Anyway we did almost decide to admit me to the hospital to stay overnight, but since that required a car ride, I figured since I was going to have to get up and move and ride in a car anyway (that was what I wanted to avoid the most) I might as well tough it out a bit longer and go on home. So we did, after making a stop by the nearest walgreens to pick up the pain meds, since they were the only ones still open at that time.

I dry heaved or actually puked the entire way home. I could not see or hear anything because of the dizziness and ringing, and I wasn’t wearing my processor on the other ear. It was unreal, like a nightmare, and that is all I really remember of it. Finally we got home, and discovered that I was vomiting blood. After about the 4th time I vomited blood, I had my husband call the emergency number for Dr. Baker about it, Dr. Baker called back pretty quickly, and this was around midnight or so. I am glad he did though, he said it was normal and it was just blood that was running to my stomach from my head. So I was glad that it was nothing serious and it didn’t mean another car trip to the ER!

I finally somehow got to sleep despite all of the discomfort, and the next day I only vomited a couple of more times, this time there was no blood. Finally the nausea started going away and that is when things started to get quite a bit better, and ended up being more comfortable in general than the last time, as long as I remembered to take the pain pills. Without the pills, the pain was excruciating. On top of that, I could feel what felt like another blister forming on my eardrum. Dr. Baker didn’t see anything when he checked it out the following wednesday, but by Friday I was pretty sure I had another blister because it hurt very much and very similiarly to the blister I had the first time around. So my husband called Ginger, Dr. Baker’s nurse, about it, and she had him come up to get some ear drops for it. By Monday, which was yesterday, it was a lot better, as well as the rest of the pain on my head, although I still have to take pain pills. But I don’t have to take as many or as often. The pain goes from my shoulder all the way up to the top of my head and stretches out to the side of my face, kind of where my eye begins. It feels bruised and tender, like someone hit me really hard with a 2×4 on the side of my head. My neck and shoulders hurt only because of the way my head was twisted around during the surgery.

Just like last time, my husband has been an absolute angel, he took an entire week off work just to take care of me, and he did everything for me, went out of his way to take care of me and make me comfortable and happy without complaining one time. I couldn’t have asked for a better caretaker. How many guys will sleep on the floor next to the bed to avoid hitting my head in his sleep, change out puke bags, wait on me hand and foot, and get up several times a night to get things I need or help me to the bathroom? How many guys would put up with constant whining and crying and complaining for a week straight and still be loving? He’s the best nurse in the world, especially since he knows me so well, I don’t have to do a lot of explaining or asking for things I need, he already knows. I don’t know what I would have done without him. I know my recovery would have been a lot worse if it wasn’t for him. He may be a dork in other areas of life, but taking care of me is his biggest strength. I know it’s one of the reasons God put us together.

Yesterday and today I have made quite a bit of progress in my recovery. At first my balance was nonexistent, my husband had to help me get anywhere. But now it is a lot better, and as long as I have something to hold on to, I can get around decently. The dizziness has calmed down some too, although the tinnititus hasn’t. I still get pretty dizzy when I try to read, though. Other than that, I am doing pretty good. I was in bed the entire time all the way up until Sunday night, so I am glad just to be out of bed and to be able to get on the computer and do something besides watch tv.

So all in all, I’m pretty comfortable now. I look forward to being able to walk normally again, drive, get out of the house, and just DO things. Oh, and wash my hair on my own. My mom and my husband helped me wash my hair for the first time since before the surgery today. It really needed it and felt so good. I also look forward to activation day, which is January 17th, 2005. That’s when the implant will be activated and I will get to find out how good it will be, and hopefully finally be rid of the tinnitus. I just hope the magnet is in a similiar place as the other one.

My only real complaint about this surgery is the fact that my ears are uneven. My left ear, the one that just got the new implant, is lower on my head than my right one vertically. It’s not very drastic, but it’s enough that I cried for a whole day when we took the bandage off, and it really bothers me. Just about anyone I’ve asked about it can see it pretty easily. I mean, one starts above my eyebrows and the other starts below them! I know that they were even before the surgery, because I am very critical of my appearance when I look in the mirror and I definitely would have noticed them before. Besides, I wasn’t even thinking of the fact that they could be uneven when I looked in the mirror after taking the bandage off. So I wasn’t even looking for that. It was a slap in the face!

I am very self conscious about my ears now, it was bad enough that I am going to have so much equipment on my head, so now I am probably never going to show my ears in public again. That means no more ponytails or “do-rags”, or my hair pulled back in the front, my all time favorite styles, and really the only styles that work with my unruly hair. I am very upset about it, and I plan to mention it to Dr. Baker, although I am pretty sure he is going to deny that it has anything to do with the recent surgery. But we are going to try to find pictures and prove it if that happens, and if it comes down to it, yes we are going to sue for the cost of getting it fixed or for him to fix it himself. So I really hope that he will be a man about it when we confront him and step up to the plate, and arrange to get it fixed. I really don’t wanna mess with the whole legal battle, but I don’t want to have lopsided ears for the rest of my life either! I feel like I have a right to have even ears if that is how they were before. I know it’s not a big sacrifice in exchange for being able to hear, but I am going to do what I can anyway.

There is a small chance that they are only lopsided because of swelling, but this seems pretty unlikely to me that swelling would affect the vertical position of my ears. Especially since I am judging by the top part of my ear that is next to my head, not the “flaps”. I very much hope that once it is healed up it will go back into place, but it just doesn’t seem very likely from a physical standpoint.

Anyway, I have an appointment with Dr. Baker tomorrow at 1:30 to get the staples taken out. While we are there, I am going to discuss some things with him, and maybe the issue of my ears being lopsided as well. But the other issues I am going to discuss for sure are basically elaborations on something he was trying to tell me wednesday, but I was too dizzy to read his lips then. It was something about vaccinations against two different bacteria to prevent menningitis, and that he thinks I don’t have Meniere’s disease after all because during the surgery, he noticed that the fluids in my ears were pulsating with my heartbeat, which was really odd and wasn’t supposed to happen. That’s all I really understood, so I am hoping to find out more tomorrow. My mom is going with me and my husband, so we will have two people to help grasp everything he says. The fact that he thinks I don’t have Meniere’s disease is a hard thing for me to accept, because I have grown up all my life struggling with all the symptoms! I think he said something about the symptoms for Meniere’s disease and the symptoms for my birth defect, which is Large Vestibular Aqueduct, were very similiar, so maybe that is it. I hope to find out more tomorrow. And I hope he’s in a better mood.

Here’s a picture, taken 5 days after surgery:

(Note: You can click on the pic and it will take you to another website that has the larger version of it on there.)

2 weeks ago, we recieved the call that the surgery was finally rescheduled for November 29th, 2004. So except for a few problems and scares concerning insurance coverage and etc, I have been nervously awaiting that day, and it’s almost here.

All this time I have been extra careful, okay, paranoid, of getting the flu or a cold or something. I’ve been walking around holding my breath whenever I pass someone up in public, bolting out of crowds as fast as possible, and as of the last few days and this upcoming weekend, not even GOING in public. Tomorrow morning is Thanksgiving, and we have plans to go to my husband’s parent’s house and spend it with his family, but in the morning we are going to call and make sure every single person that is going to be there is not sick or has not been around someone that is sick, if they are, we aren’t going. We are also going to visit my grandparents tomorrow evening and same applies there. The last thing I need to deal with is some kind of illness on top of what is already probably going to be a horrible recovery, if it’s anything like the recovery for the first implant.

The recovery is really the only thing I’m worried about. The last one was bad enough that I said I would never ever do it again. But it turned out to be well worth it, so that is why I am doing it again after all. So maybe this time, even if it is as bad as last time, at least it will be easier to get through knowing that there is a good chance it will all be over with and I won’t be dizzy and sick forever, and that once I get activated and used to it, I will be able to hear so much better than I ever have before.

As for implant #1, it is still doing well. Nothing major to report, it is still just a slow but steady pace of improving over time. Things are still sounding more natural, and it is much easier to use it for the basic sounds. The hardest part is reminding myself to pay attention to what I am hearing, to try to take in any new sounds that didn’t register before, and also when I know for sure there is a sound I can’t hear too well, I work on trying to hear it better, getting my brain to zero in on that sound and filter out the rest of it. For example, popcorn popping in the microwave. I can barely hear the popcorn popping over the hum of the microwave, but if I concentrate really hard the popping is gradually more noticeable. It’s just hard for my brain to filter out the microwave hum enough to hear the popping really well.

That’s about all the CI news for now! The next journal entry will be after my surgery for the second implant in the other ear. I am sure this probably will not be written until about a week after the surgery, if it’s anything like last time. So until then, adios!

Monday, November 8th, 2004

Well, to make a long story short, a few days before October 11th, we received the news that the particular implant I was scheduled to recieve was recalled by the company that makes it, due to manufacturing defects. Basically what happened was, during the manufacturing, some of the implants ended up with moisture inside them and this has been causing some people’s implants to malfunction even a year after the date of implantation. When this happens to someone, they have to go through another surgery to get it replaced. So the implants were sent back from all the clinics to the manufacturer to be put through more testing to make sure they wouldn’t malfunction, and as of right now, are on their way back to the clinics.

So, I didn’t get implanted, as the surgery was called off until further notice. Since they are just now getting sent back to the clinics, I am still waiting to hear when my new surgery date will be.

Shortly after we received this news, the company that makes my implant actually Fed-Ex’d me a letter basically saying “It is possible the implant you currently have may malfunction, here are signs to look for and what to do in the event that this happens”. Yay. I’m praying I’m not one of them, because I do NOT want to go through surgery for what will be a third time after I get the second implant.

So that’s the CI news!

Anyway, thursday we finally received a letter from the insurance company. Well, it was a pretty quick response, considering that it is an insurance company. They basically said that they have approved the second Cochlear Implant in my other ear, which means they will cover it! Yay! This means my grandparents won’t have to cover the whole cost after all. What they do have to cover will be even cheaper than last time because of having met the deuctible with the last surgery.

So my husband called and left a message with Dr. Baker’s nurse, and she called and left a message on the machine Friday morning. I had my mom tell me what she said by holding the phone over the machine while I played the message back. My mom told me through IM that they had scheduled me tentatively for September 7th, and to call them back and let them know if it was good for us. She also said that it would be at a different place this time, along with other stuff I can’t remember.

My husband and I decided over the weekend that since getting this surgery is pretty much going to put me into recovery enough to ruin all the holidays this year, including my upcoming birthday and anniversary, that we would see if we could get the surgery delayed until after our anniversary so that I could enjoy at least one event this year. We decided on October 4th, since our anniversary is October 1st and we wanted to go on a little road trip or something. So he called and left a message Monday asking if we could get the date of October 4th. Ginger called us back and said that the 4th was taken, but that the 11th was available, so we took that date.

So, the official date for the surgery is October 11th, 2004. That works out well for me, the only thing I don’t like is that my birthday is on the 24th, less than two weeks after the surgery, so I will not be feeling very good for my 25th birthday which to me was kind of a milestone birthday. I’m more upset about that being ruined than the holidays. Oh well, can’t have it all, at least I’m getting to be well for our 5th wedding anniversary! My husband and I are thinking about getting tattoos for our anniversary present to each other, so at least I will have some time to let it heal before the surgery if we do.

Anyway, I am very glad that the insurance company is going to cover the second implant. I’m glad the surgery date is soon, because that means more recovery time before the holidays and when scool starts in January. But I am very nervous.

I’m nervous because of the fact that if I get this surgery, I will be destroying all that’s left of my natural hearing in that ear, which is all that is left of my natural hearing at all. I will no longer be able to hear with that hearing, it will be Cochlear Implant hearing for the rest of my life, and there’s no way to get the natural hearing back.

This particular issue is kind of in a way silly for several reasons. The first being that we are pretty suspicious of the fact that my hearing aid was in fact, causing Meniere’s attacks all this time. I noticed it because I would start feeling sick whenever I put my hearing aid on for a while. So I’ve barely worn it since I took it off when the implant was activated. If I’m not even using my natural hearing that much, what’s the point of saving it? I might as well take advantage of a hearing nerve that was much healthier than the one that DOES have the implant right now. Everyone’s pretty sure that I will do even better with an implant in that ear than I do right now with this one.

Another reason this issue is silly is because, even if I were to use my natural hearing a lot, the fact remains that it’s not that good. It sounds pretty muffled compared to the implant, and I never realized how many sounds I actually missed out on. I hear so many different sounds now with the Cochlear Implant. Although there are still a few sounds I hear better with the hearing aid, I think that the implant is starting to catch up to it as of just recently, like I said in my last CI journal, I am starting to hear more of that. So there’s really no good reason to hang on to my natural hearing.

I think I am just nervous about destroying it because it’s all I’ve had all my life… something that has always been with me for as long as I can remember. It has always been one of my “At least I have’s”. No matter what went wrong in my life, I’d alway say “At least I have…” and it was almost always “what little hearing I do have”. It was something that I thought I needed. I don’t need it anymore, when I can use such a wonderful technology and get far more out of it.

It’s like saying goodbye for good to an old friend. I almost feel as though I am betraying it. I realize this is a natural reaction to something like this, especially when I thought I would have more time to prepare for the surgery than I do, more time to “say goodbye” to that old friend. But I realize it doesn’t have to be a bad thing. Sometimes you just outgrow things in life and it would not do you any good to hang on to it. You’re better off letting go to make room for bigger and better things. At least I had what little of my hearing I had all my life, but now I can move on to at least I have two implants to help me hear better than I can ever remember!

So, in that respect, I’m ready to move on.

That just leaves one last thing that I’m nervous about: the recovery. The recovery for the first implant was so horrible, I swore I’d NEVER do this again. It is not something I wish to go through again, and neither does my husband. Yet here I am, willing to weather the storm yet again for what will hopefully be well worth it in the end. What’s scary is, I’m pretty sure I remember Dr. Baker saying that this recovery could possibly be worse than the last time, because last time my body still had the balance in my unimplanted ear to rely on and help compensate for the loss in the other one. But this time it won’t, so I may be dizzier and for a longer period of time. My husband says he doesn’t remember Dr. Baker saying that, but my husband doesn’t remember a lot of things. Add that to the fact that he was mind-numbingly (emphasis on mind-numbingly here) tired at the last appointment with Dr. Baker, as he usually is with most appointments, it’s no suprise he doesn’t remember it. So, I can’t put a lot of stock into the fact that my husband doesn’t remember it. I do, and that’s what’s important. Deep down inside though, I hope I just imagined it. But I’m pretty sure I didn’t.

I think the recovery thing is really the only thing that is making me panic when I think of the surgery right now. I’ve already had one panic attack from it, I think I am going to have to try to pretend I’m not doing this to get through the month. Everytime I think of the last recovery and how this one could “possibly”, which we all know is Doctor-Speak for “Will”, go worse than the last time, it’s all I can do to keep from calling Dr. Baker’s secretary and calling the whole thing off! Am I crazy for willingly putting myself through hell for the next 2 months?

I have an appointment to see Dr. Baker one last time before the surgery. When I see him I guess I will ask him to PLEASE make sure he does NOT give me the wrong painkillers this time. Last time he kept giving me some with Phenergan in them, which I am allergic to. Right after the surgery the nurse also gave me the same thing. It made me very sick. I HAD phenergan listed on my allergy band on my arm! They could have really hurt me, if I had thrown up severely I could have messed up the surgery site! What is the freaking point of the allergy arm band they put on you if they give you what you’re allergic to anyway?!?!?!

Then Dr. Baker couldn’t seem to write the prescription right for the kind I can take, then when he got the right one, he forgot to write the strentgh on there and we had to go all the way back up to the office after driving all the way home to the pharmacy. and I ended up spending an hour an a half in a car right after the surgery miserable as hell when, if he had written them right, I would have only spent 30 minutes in the car and then been in bed and comfortable. He apparently didn’t know what Phenergan was or which painkillers have it and which don’t.

This time, my husband is going to try to get me home as soon after the surgery as possible and get me into bed before the morphine wears off. Hopefully everyone will get my meds right this time and I won’t have to suffer so much. I think if my pain hadn’t been allowed to reach the level it did due to not having painkillers when it all wore off, it might not have gotten bad at all. That and not being in the car for an hour and a half would have helped.

I am so not looking forward to this…

Today marks 6 months and 18 days since surgery, and 5 months and 18 days since activation. The last entry I wrote about the Cochlear Implant was back in June.

Not much has really changed since June. I’ve been steadily improving, slowly but surely. Things still continue to sound better over time. I can even enjoy music a little bit now, I have noticed as of the last couple of weeks that I am hearing more of the music.

About 3 or 4 weeks ago, though, I showed up for a audio therapy appointment and Tami started me on the phone right off the bat. It didn’t work out very well and had me frustrated, so the rest of the entire appointment went very badly. I seemed to be missing out on everything.

At first we thought it was just because I got frustrated right off the bat, but over the next couple of weeks I noticed I was asking people to repeat themselves more than normal and having more trouble understanding speech. I still don’t know if it was just my brain playing tricks on me or if there was something messed up with my implant or my hearing nerve. But during the last week or so I haven’t noticed it as much, so it’s either gotten better or I got used to it. But I still didn’t think I could hear as well as I had been.

I saw Dr. Wolfe today for another mapping, and we brought that up. He put me in the booth and I did not do as well as I did last time, I don’t think. But he said I still did pretty well. He said that maybe with a new map, things would improve, that maybe that’s all I really needed. So we went into the mapping room and he did all the usual stuff he does at mappings, put me on a new map and put 2 other maps on the processor, each one a little louder. He wanted me to try to work up to the loudest map by the end of 3 months, when I see him again. He also discussed trying to tweak the hearing aid to work with my implant and to not trigger meniere’s attacks, so that my auditory nerve in that ear won’t atrophy. He went ahead and tried, but he couldn’t do much with it.

My biggest news since my last entry is that I am considering implanting my left ear! (The one with the hearing aid). I have already seen Dr. Baker about it and he put the letter of determination through to the insurance company. Now it’s just a matter of waiting to see what the insurance company’s response is. I hope they say yes, but it’s ok if they don’t because my grandparents have offered to pay for the second implant if the insurance won’t.

It would still be best if the insurance company decided to pay for most of it, though, because my grandparents are not the richest people in the world, so it would help save quite a bit of money for them. I am thinking about possibly not getting the implant if insurance doesn’t cover it, because I hate for them to spend that much of their money on me. They’ve done enough. I’m not going to worry about it right now though. I will make decisions upon recieving news from the insurance company.

I discussed a secodary implant a while back with Dr. Wolfe. I had told him that I would be needing a new hearing aid soon, because the one I have is about to break down for good. He brought up the idea of considering a second implant, because if the insurance covered it, it would actually end up being cheaper than a new hearing aid. He also said that he is pretty sure I would do very well with 2 implants, that I would end up being able to understand quite a bit of speech. I don’t doubt that a second implant would help a lot!

With just my hearing aid, I got 35% of words. With just the implant, I got 65% of words. With hearing aid and implant together, I got 85% of words. Dr. Wolfe said he’s pretty sure that with a second implant, with the two of them together, I could get 100% of words or close to it.

The way I see it, I don’t really have much to lose, especially now that music is starting to sound better. I’ll miss hearing “naturally”, but if wearing the hearing aid triggers meniere’s attacks and makes me feel sicker, and I’m not wearing it because of that, what’s the point? My hearing nerve in that ear will just atrophy if I don’t use it. And it’s done too well to let it atrophy. Besides, everything just sounds muffled now with the hearing aid. So I decided to go ahead and implant that ear because I will get a lot more out of it than I would otherwise. I even canceled my classes in college for this semester, knowing that I won’t be able to get the surgery and do classes at the same time.

I’m excited, but trying not to let myself get too excited about the whole thing because it always comes back and bites me in the ass when I get excited about anything.

Today marks 4 months and 4 days since the surgery, and 3 months and 4 days since the day of activation.

I haven’t written in over a month because there hasn’t been much to report on. My progress with the implant is steady. As time goes on, I find I like it more and more, and I am noticing more sounds. The A/V Therapist, Tami, is determined to get me talking on the phone. At first I wasn’t sure if this would be possible, but I am starting to be able to make more sense of phone conversations. I still need a cue of some sort though.

I still notice that there are a few sounds that I hear with my hearing aid, when it’s on, that I don’t with my implant. It’s just not picking it up.

Overall, I think I am just too impatient. I want to make faster progress than I am, even if apparently I am already making incredibly fast progress. I just want to get to the level where I can hear with it as well as I could with my hearing aid. I miss talking on the phone and my family, including my husband, misses talking on the phone with me. I tried with my hearing aid, but my brain is just already working so hard, it’s not worth the pain of trying to figure it all out.

The last time I went in for a mapping, Dr. Wolfe gave me the same program on all three slots, but different volume levels. That was over a month ago, and I’ve found that I haven’t progressed to the new volume levels as quickly as I did before. I still have to start the day out on the lowest one, then I move to the middle one later, and then only occasionally do I find that I need to move to the third one. If I do it before I’m ready, everything is too loud.

I also have a sneaking suspicion that the implant doesn’t sound as clear as it did before the last mapping, even with the new volume settings… I can’t tell if it’s in my head or not. It just doesn’t seem as “easy” to hear with it as it did before. Shortly after the mapping I kept thinking it would improve as it always did, and to a degree it did improve, but it doesn’t seem to be as good as before. Maybe it’s just in my head.

My main complaint with the implant now is the pain that head is in after a day of wearing the outer parts. The part under the magnet is tender, and the part that the processor hangs on is sore. It’s getting to be annoying, my ear does not seem to be toughening up to it at all.

Other than that, everything is going great!